TY - JOUR
T1 - Let's Talk about Lupus. Overview of an Innovative, High-Reach, Online Program to Fill the Education Gaps of Latin Americans Living with Lupus
AU - Drenkard, Cristina
AU - Fuentes-Silva, Yurilis
AU - Parente Costa Seguro, Luciana
AU - Torres Dos Reis-Neto, Edgard
AU - Ibañez, Soledad
AU - Elera-Fitzcarrald, Claudia
AU - Reategui-Sokolova, Cristina
AU - Linhares, Fernanda Athayde
AU - Bermúdez, Witjal
AU - Ferreyra-Garrot, Leandro
AU - Acosta, Carlota
AU - Caballero-Uribe, Carlo V.
AU - Sato, Emilia Inoue
AU - Bonfa, Eloisa
AU - Pons-Estel, Bernardo A.
N1 - Publisher Copyright:
© Wolters Kluwer Health, Inc. All rights reserved.
PY - 2022/3/1
Y1 - 2022/3/1
N2 - Background/Objective The Latin American population living with lupus lacks reliable and culturally competent health education resources. We describe a Spanish and Portuguese online program to educate Latin American people about lupus. Methods An extensive network of Latin American stakeholders participated in the program design, implementation, dissemination, and evaluation. Patients and rheumatologists selected core topics. Rheumatologists prepared the content using evidence-based data. Adaptations were conducted to meet the audience's health literacy and cultural values. Social media was used to post audiovisual resources and facilitate users' interactions with peers and educators, and a Web site was created to offer in-depth knowledge. Results The most massive outreach was through Facebook, with more than 20 million people reached and 80,000 followers at 3 months, between the Spanish and Portuguese pages. Nearly 90% of followers were from Latin America. A high engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese Web sites accumulated more than 62,000 page views, and 71.7% of viewers were from Latin American. Conclusions The engagement of patients and stakeholders is critical to provide and disseminate reliable lupus education. Social media can be used to educate and facilitate interactions between people affected by lupus and qualified health care professionals. Social media-based health education has extensive and scalable outreach but is more taxing for the professional team than the Web site. However, the Web site is less likely to be used as a primary education source by Latin American people because they value social interactions when seeking lupus information.
AB - Background/Objective The Latin American population living with lupus lacks reliable and culturally competent health education resources. We describe a Spanish and Portuguese online program to educate Latin American people about lupus. Methods An extensive network of Latin American stakeholders participated in the program design, implementation, dissemination, and evaluation. Patients and rheumatologists selected core topics. Rheumatologists prepared the content using evidence-based data. Adaptations were conducted to meet the audience's health literacy and cultural values. Social media was used to post audiovisual resources and facilitate users' interactions with peers and educators, and a Web site was created to offer in-depth knowledge. Results The most massive outreach was through Facebook, with more than 20 million people reached and 80,000 followers at 3 months, between the Spanish and Portuguese pages. Nearly 90% of followers were from Latin America. A high engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese Web sites accumulated more than 62,000 page views, and 71.7% of viewers were from Latin American. Conclusions The engagement of patients and stakeholders is critical to provide and disseminate reliable lupus education. Social media can be used to educate and facilitate interactions between people affected by lupus and qualified health care professionals. Social media-based health education has extensive and scalable outreach but is more taxing for the professional team than the Web site. However, the Web site is less likely to be used as a primary education source by Latin American people because they value social interactions when seeking lupus information.
KW - health education
KW - self-management
KW - social media
KW - systemic lupus erythematosus
UR - http://www.scopus.com/inward/record.url?scp=85104691673&partnerID=8YFLogxK
U2 - 10.1097/RHU.0000000000001728
DO - 10.1097/RHU.0000000000001728
M3 - Artículo
C2 - 34014052
AN - SCOPUS:85104691673
SN - 1076-1608
VL - 28
SP - 368
EP - 374
JO - Journal of clinical rheumatology : practical reports on rheumatic & musculoskeletal diseases
JF - Journal of clinical rheumatology : practical reports on rheumatic & musculoskeletal diseases
IS - 2
ER -